a collective unravelling

written in march

I send love to my friends who have been practicing being housebound for five or ten years before this era, who had already capped meeting sizes, distanced and locked down. We would have been incredulous had we been told these measures would become not just widespread, but illegal to deviate from in our lifetime.
Due to a virus.
Albeit, not the infester that changed many of our histories, that insidious but rarely fatal, glandular fever. It all began with a virus for me and whilst I believe the fear being spread is too strong, I also know in my very cells that viruses can alter.

If we had been told this strange time was to come, I would have thought that it could have been almost heartening to be all in the same boat for a league. Me no longer an inch more distanced than others. A special pass handed to me to skip everything that was over exerting, and a pass given to everyone else just for good measure so that no one feels a pang of FOMO. Missing Out Together (MOT), will that be good?

In reality, no.

It's almost like I can feel a heaviness that wafts in the air, and settles on empty cafes, and seeps in and out of the nooks and crannies of every house which looks more lonely than it used to. It's a groan. It rings loudly in the silence, that everyone is missing a lot.

I overheard two conversations on my recent forays into fresh air, one was a man saying to another, 'I'm just waiting to get it...' and another was, 'masks'.

(I was cycling and my chain came off. With greasy hands I struggled to get it back on for my first time and a kind gentlemen noticed my plight and came to help. We were closer than 1.5 meters from each other. I said, 'I know we're not meant to be close, just tell me what to do from a distance', but he came in and risked my breath and then I couldnt wipe the smile on my face for a few minutes as I raced along afterwards.)

I would have thought before if it had been prophesied to me (and mercifully it wasn't), maybe everyone will handle their removal from their old lives with mental tranquility? Has my illness grief been a defect in my resilience and adaptability? But, I would have been wrong. I see humans ache, hardcore ache like I have never witnessed. It's a little inhuman not to work and rub shoulders with others often. Composer Brett Dean, isolated in hospital with covid wrote: "A number of correspondents have asked whether I can use the time to compose, however it hasn’t felt like a time of creativity in any way whatsoever. Like the rest of humanity at the moment, I see this as a period we must all get through, learn from and then put behind us."
Illness and isolation never will be cruisey, despite what cursory glances suggest. It isn't a holiday or escape. Daily sleeps for ten years have not been a pleasant task for me in the slightest; they are intruders to waking plans, not naps on a balmy island.

I doubt a many-year stint of isolation would lessen the ache, for anyone. It hasn't for me though I have carved a new way of living. Adjusting to things and aches going away are entirely different things and not to be confused. The missing-humans-and-human-flourishing ache lingers. Intrinsically programmed.

This unexpected release from outing hangovers and the novelty of being like everyone else is not as comforting as I would have thought. I savour some parts of it. Mostly I am struck by something new - that staggered suffering, whilst often bringing a sense of isolation, is very good. Waves dunk us at different times in our lives and we drink in gulps of joy at different times. We use ventilators one by one. It's better to have a few pulls in a jumper, than a whole row unravelled.
I can see it clearly now, of course it's better that not everyone is struggling at once with the same thing.

A couple of nights ago I loaded a recording from the MSO as I sat on the couch with Ben, a pleasant evening where our children had gone to sleep for a short spell, and we had banned ourselves from covidity conversations. I saw that one of the musicians was a classmate from school.

That school where I got the virus which left the package: Post Viral Fatigue for DC, at my door, and gently taped it closed.
I thought, as I watched the musos do what I was hoping to do: I was the snag, the pulled stitch. I have not liked being the snag, but mercifully the whole knit didn't unravel, just to keep me company. They kept on in their practice rooms and now they're bringing us unadulterated beauty.
When I later see others return from isolation to unlimited human interaction, and I don't go as far as them, and I don't go without hangovers, I think I will be able to be more wholeheartedly celebrate that many can flourish after tasting a collective unravelling.  

the end of drudgery

Often when I sat in the gym on the seated row machine, looking around the grey equipment, I had a curious experience. I felt like I was looking in on our society as one from another society or from a century ago. I saw us like rats on ferriswheels, encaged, in an artificial environment, human yet almost robotic. I felt bleak like I did when I read 1984.

I never thought of not going, though. Never. And I didn't hate it even though I often had a mini existential crisis there. I just did it and felt a little unhuman mentally. When dwelling in a body that stashes blood in the feet making them the hue of luscious berries, whilst the other organs are in a state of weak jealousy, you take rat wheels with gratefulness. Cardio helps my low blood pressure a lot, and instantly. It is like life to me, because blood is life.

Years ago on the exercise bike, I would try to inspire myself to push through the discomfort by reminding myself that this was so I could get well enough to have a baby. Now that this deepest dream has come to fruition twice, I chant that I want strong legs so I can dance. I have to have a reason to get my heart rate up to that unconfortable can't-talk level. I don't like to think about POTS much, though it is the reason I am there. It doesn't uplift me to dwell on the labels which describe the challenges in my body. Apart from grief days when I'm very unwell, and bad recoveries from 'normal' outings which sting me with their wrongness, I tend to manage my health and it's requirements without giving it much mental space now days. Just as I brush my hair and dress by humdrum habbit, so I take keep my diet, manage my supplements, and exercise.

So, exercise at the gym was a fine yet drab peice in my life. For ten years, almost without break. I can't even lie down unwell for a half a day without my blood pressure dropping in a very life affecting way due to lack of exercise.
Ballet, that's desert. My come-alive form of activity, although the muscle recoveries are a significant cost.

When Covid-19 sprang into my unsuspecting reality, I was not excited about outdoor rides. I didn't like that I couldn't get my heartrate up to precisely 170 bpm, for exactly a 2 minute interval, in a completely wind free environment, on the one not-squeaky exercise bike at the gym, looking out at the carpark watching people buy pizza and park their cars with more skill than me one hundred percent of the time.

I wanted that; that blandness.
I wanted it because it was normal.

My first ride was on Ben's bike. He is 6 foot, and I am not. I was precariously balanced on top of it, riding down roads at peak hour, and because the frame was such a stretch for me I soon had blisters on my hands. I was so unstable on it I couldn't even use my arm to indicate and my saddle was bruised for days.

Next I tried my baby sister's bike and it was just right. It was a wonderful size for me, but I was frustrated that the one gear wasn't hard enough to get my heart beating fast in the minimum amount of time that I could achieve at the gym. And I didn't like riding on the road.

Eventually I decided to try the rail trail which my house is located on, because I hadn't any fondness for wondering if cars would treat me with respect. After 2 years of living along the trail, I finally set off down it.

I got a whiff of fire smoke in the first minute, and it took me to childhood and early marriage holidays and golden autumns. I had never smelt anything at the gym other than sweat, my own and others, or men who had held the trigger too long on their aerosols, so I was pleased.

I rode past old people with frames and on scooters, and pondered their lives and their courage as they fill their days without physical prowess. I saw two ducks splashing away with glee in their muddy playdate. I involuntarily smiled. You don't smile at the gym. It's not cool. You will look like you're a real person, with real feelings.

As I rode on, to my amazement I found myself in the country. I live near the city centre where Ben rides to work, so I wasn't expecting rural properties so soon. Trees and green surrounded me, and dappled sunlight littered the path with excruciating loveliness. I smelt dung and it made my heart leap as I located the cows of it's making. I smelt sheep. I'm a kiwi who will never tire of the scent of sheep. I sniff my balls of wool with relish. I saw people tending their glorious horses. I saw alpacas, stubby ponies, and great danes. Rabbits were nibbling on the side of the path.
The air was crisp, and the sky was beginning to paint it's end of day pictures. I felt the time of day, the almost twilight, was too beautiful for me to inhale. By now I was puffing and sore and struggling, with no idea what my heart rate was. But I didn't care if it was 120 or 170 bpm, the stats didn't seem to matter.

Soon it came to deciding to purchase a bike instead of a gym membership. Now I set off with happy anticipation into the cold evening air when I'm feeling unwell, and arrive home in better health almost invariably. It still astounds me almost as freshly as the first time a decade ago, like it's some bizarre magic trick. Will I ever adjust to this back to front cure? And now, it's not drudgery.

To find this aliveness and happiess, through being forced to exercise for ten gruelling years, is so bright. To find it from another forced event: a pandemic.

It is like many other things that have happened to me, a books worth, of unexpected blessings. I have a yellow book with them all in and more to write.
Ben cosleeps with our babies because I need blocks of sleep and we wouldn't train them that their cries go unheard. This 'imposition' has given our little ones a deep love and trust of Ben that would not have been likely to occur if they'd spent only an hour with him after work each day.
And so, something else life enriching grows up out of this life we would not have signed up for.

Ben and I have no shortage of mutual interests, and we began our cloning early, but he has spent 12 years interested in biking without me sharing in it whatsoever. He is fairly stoked to be looking into baby seats and tail gaiters for family weekend rides.

Time, my friend!
I was told two years: two years and your illness should end.
And now it passes ten years.
I am somewhat healed. That's the terminology I use instead of still unwell. No blasts of recovery, no healing prayer success story, no tale of how I changed my thoughts and overpowered my body's reality, no miraculous diet or curative supplement or medication.

The plant in my garden that I thought was totally dead, not a hint of green, it was slowly working underground. Imperceptibly. And then it budded and I was astounded.
That's my journey, so slow, it's almost imperceptible even to me. But growth takes place in private darkness, hidden away, and I was made by One who views ten years as a minute.

Thinking in decades is strangely hope inducing!
What hopeless or bleak situation will be eliminated in another ten?
What aliveness will come from something still dormant...

still still

We all stopped for an illness

And in the stark stillness

Though short in term, and heath intact,

We struggled

Taste of those who live, sick and long, without the fullness

We will soon embrace, resume, 

And my pace, soon solo: looms

Cheer deeply the whir restarting after the collective crumble 

And ponder the time the world asked nothing of us...

divided: on being great and awful

Phone calls to my friends of late have been them cajoling their toddlers to let Mummy talk for a minute, interjected with feeble enquiries as to how each of us are going and just as we reach the end of a fragmented sentence mostly filled with vacant 'ums', the frittered thought is interrupted by my baby bellowing down the receiver because of course, he is attached to my very person. We will hang up after our chaotic interchange, and I will quickly change a nappy, sard a onesie, dress a doll, sweep a mess, breastfeed a baby, navigate a tantrum (try to), burn my eggs and take a sip of my lukewarm tea with one hand. Quickly quickly, because I need to wear baby bear for his next nap. Then we will do that for another eight hours, eight weeks, eight months until our fantasies have simmered down from a holiday in a warm location to: just one hour to concentrate on just one thing. That is what I dream of. To do something in an undivided manner, with mindfulness, to indulge in a pause from two minute staccato tasks. This season is like scrolling through a social media feed, 5 seconds on one person, scroll on, and on and on and on until you your very being has been fragmented like unruly confetti.

But it's not just physical dividedness that grates us, it's emotional complexity.

In our peicey conversations, my friends and I try to convey complex thoughts which do not fit into one minute, especially one minute punctuated by squawking small people. We would actually like to feel one simple emotion at a time, and it would be far easier to convey too. "I'm doing good, how are you?" Imagine feeling good about all areas of your life. Purely good in all ways. How pleasant it would be to feel pure euphoria, pure happiness, pure contentment, pure health, pure goodwill. So much better than the usual 'fine with a dash of sad and splash of disappointed and a smidge of frustrated'. It would be simple on a personal level, and simple relationally. We could understand a person without having to invest large amounts of time if they weren't so multifaceted. But we live in a world, as I recently read, which is constantly fraying at the edges. Occasionally life may seem like a freshly trimmed piece of fabric, but in a few minutes the ends will be wiggling and fraying and perfection which seemed almost within your grasp, evaporates.

There is no perfect on planet earth. This is a place of dust and dirt when you just vacuumed two days ago. Especially if you have two shaggy pets as we do, one of which is our morrocan rug.

Myalgic Encephalomyelitis or the poorly named Chronic Fatigue Syndrome has done a fine job of inserting not dashes, but drenchings of imperfection in theoretically good times. I would say that is the super power of this illness: making every moment a complex experience. Though to be fair, the common cold achieves this too. The premise of ME is that your body will, on a deep cellular level, suffer for doing things in proportion to the energy expenditure of the thing you did. Post Exertional Malaise (PEM), the defining characteristic of this disease. Not just tired after things, actually dysfunctional.

In my worst times, taking a shower has been over-exertion, and the malaise lasted a day, so I am astounded and thankful to God that my womb grew two human beings, which is far more exertion than standing under hot water. During their gestations I was faint like a whisper and woefully wiped. Almost lifeless, whilst giving life. But when I met my son after 9 months, in all his wide-eyed chubby aliveness, my heart overflowed with relief and amazement that my grey, black and blue time was worth it. Our son's names mean Bright, and Lucky. Our daughter's mean Golden. After the night, we wanted their names to be like a sparkling new morning.

With Ben significantly sharing the load and grandparental support, here we are traversing again 'the baby year'. Extreme exertion, much malaise. This is a year of ill health, few outings, and not much at all left over. This is a year of much delight. I'm overjoyed and pummeled, fulfilled and struggling, never wanting this to end and longing for it, happy and broken.

It's terribly confusing to be so polarised. I am not a quick conversation. As my friends know, I do not write brief messages. I am words for days.

ME sufferers are notoriously missing. My good shoes are lying in my closet, in a condition too neat for how many years I've had them. This saving has not offset the pill spendings. Going beyond our allotted energy packet is a risky business, and it is rare we escape from punishment for 'over' exertion. Over the last decade I have nervously and hopefully, gone to events that I knew were beyond my payment-free zone. Nervous, because that's the emotion one has before something difficult befalls them. For a time, I may be thrilled and beaming to be out doing something I deemed worthwhile: in a car, in a cafe, in a concert, in a church, in a home, in a mall. Connecting, investing, living, enjoying, bombing through energy.

I vow to keep my thoughts about the event and the aftermath totally separate, so that the aftermath bleeding doesn't seep into the event and stain it.

Now I am lying in bed with vertigo and walking to the toilet hunched in half so that I don't pass out. As I lie through my 'hangover' hours in the dark, strength all stripped away, thoughts of what occurred are muddied; dark seeps into what was light. It was worth it? It was the right thing, by myself and my family? This body flagellation feels wrong...this inability to parent, to care for myself, this use of Ben's sick leave? I wobble in my ability to keep the aftermath separate. It was not thrilling, it was tainted. It was mixed, and murky.

So possibly not wise. So sad.

I long for: 'it was great, had no payback.' A single experience.

No payback. No murkiness. No fumbled replies about how it was.

No, "It was great, and awful."

Great and awful don't go well together. But they are always hanging out.

I admire the women who are taking to the world of clipped one liners, social media, and writing mini essays with the intention of being real. Because sunny pictures with sunny captions give the impression of: unpolarised realities. Two paragraphs of real talk still doesn't quite capture it all though. I can't summarise my life lived with ME in two paragraphs, nor do I want to. I find it complex to articulate, and raw for me to casually bear to a casual hundred-and-something persons who may read for 10 seconds before they return to their own fragmented reality. Perhaps then, I shouldn't share my happy moments there, so that I am truly authentic. Perhaps scrollers are aware this isn't the full reality, that lives are deep and wide beneath the surface, or maybe they ponder if they're the only one with dust everywhere.

Being seen and known is such a profound longing; a soul longing. To matter when we are thriving, yes, but even more so on our least sunny, most humdrum, feeling awful, achievement-free, shoes-in-closet, no camera days. To be known fully, weaknesses hanging out all over the place, and loved anyway. I taste this with Ben and it is one of the best tastes in the world.

My health is thorny, but I'm not the only one who is great and awful. Humanity is dreaming of the day when great and awful are paired no more, and the sunny needs no two or ten paragraph disclaimer because, it. is.all.

Mummy coming too?

A few weeks ago Aurelia was going out with Ben. She's been going out solo with him since she could first go without milk for a few seconds. He used to rush back and pass me a boobie obsessed waif, but the trips can be longer these days. It used to be her favourite thing to go with just him, but now she says, 

"Mummy coming too?" 

She asked it brightly, with hope that I would be joining them. 

"Mummy's staying home this time. Just Aurelia and Papa," I said. 

Resignedly she said,

"Mummy bit tired. Mummy need a little break." 

I felt sober as I agreed with her. How many times has she heard those words to be uttering them at just turned two? It must be hundreds of times. I was stunned by her comprehension, but hearing her disappointment in my body grazed me. My body has daily let me down and down, and it is not comfortable to know that it's going to disappoint her too. She was born oblivious, neither aware nor affected by my state, but each year she will discover a tiny bit more about how her mummy is tired, hurting, can't go, can't stay up late, can't entertain, can't work part time, can't exist as she expected she would. Aurelia encounters illness young, and she will watch it from the closest seats in the house. One day, it's likely she will glimpse me lying in bed unable to lift a fork and bowl because I went to one of her evening concerts, and will that hurt her more or less than me not attending? 

I'm like a rose which withers soon after it has opened. A saggy petal after my shower, and wilted by noon. I don't imagine it would very pleasant having a wilted mother. My mother is and was a beautiful and robust evergreen. I will have to figure out a different way. 

"Mummy bit tired," is certainly the sanitized version. I'm glad that she didn't say, "Mummy so wildly zausted she calling Papa frantically to come home from work, cause Mummy can't form nother word in eternal strength-sucking story she reading me, and can't cope with nother of my tantrums where I lie on the floor and scream, they must really push Mummy over the edge cause she buyed ear plugs so that she is less zausted by my commotions. Mummy and Papa lucky to get me in bed before 9 o'clock anymore cause Mummy holding onto to my long day sleeps like a woman obsessed. She must be very tired lady."   

I mean, we haven't told her all the gory details. 

I was watching the heart wrenching documentary about CFS, called Unrest. I've waited and donated for it's release since 2012. Interviewed in the piece is a mother who said she missed the events that no parent misses: sports events, dance concerts, school ceremonies, and parties. The big ones, where every mum and dad shows up with all the other exuberantly proud parents. But she said something important: CFS mums may miss the documented events (or suffer disproportionately afterwards), but they are more present than most parents. They can't fly out the door leaving a whiff of perfume as they drive off to work, and socialise, and volunteer. They are allergic to perfume. Current thought says that children need to see their mothers taking on the world, but I'm not convinced.  

Unwell parents will be there when their child leaves for school, and when they get home, and years after the toddler doesn't need them every minute. They will be there for listening and talking and reading and being, the being that occurs behind closed doors or in peaceful nature. They are not too busy. 

The pace of life in our family isn't exciting. I want to take her to Christmas Carols this year because the last two years I was not well enough from her waking in the night. It stung, the FOMO that arose from hearing of people blithely attending my favourite event and probably not being incapacitated afterwards. I also wanted to get through Christmas Day without a bad hangover, and that didn't eventuate either, despite avoiding a month of preliminary fun. My body objects to the flutterings of December that I have loved so much since childhood, and the missing out pains haven't completely resolved. But I spent some of the happiest mornings of my life that December, dancing her around the lounge to Rend Collective carols every morning, smelling the pine needles and her pink onesie, and showing her Christmas lights and mice on the tree. In our home tucked away from eyes and hype, we lived quite wonderfully that month. 

It is to my detriment that I forget that the unseen and undocumented lounge room living is as important and impacting as all the rest. Not as glossy, no, but full of heart. My body is a bit tired and I need a little break, but my heart has as much vigour as it did before I wilted. Hearts can be green when bodies are withered, and love is not bound by the vessel it dwells within. Love can be exhaled in a quiet moment from a weak person on a couch.

what evil befell me in the night?

On Tuesdays I have a slight problem. I have a problem that I don't want to talk about much, because I know full well that I am to blame. And if I talk about it, well, then my counselling listener may say: "How about you either stop bringing this upon your self, or don't complain? Don't hurt yourself and then moan that you're hurt."

And I fully agree, and fully disagree. 

I wake up in the morning on Tuesdays and hello dark world, something is wrong. What evil befell me in the night? Yesterday I was living on land, and today I have been dragged beneath the deep waters and not been turned into a mermaid. A metal corset has been screwed around my waist, and hanging from it are two rusty chains with concrete weights attached to them. I have to wade for hours, and the waters feel thick, slow, and the weights are heavy.

My cells are not the same as a healthy humans, alas. Though, alas is not a sad enough word. Alas seems to shrug, too nonchalantly.  

My cells cannot heal micro tears in my muscles whilst generating the energy I need, all at the same time. That would be asking too much, that would be asking for the pleasantness of normality and we must not forget that All Normality Must Have Very Unpleasant Side Effects. If it didn't, would I really have CFS?

I ate a delightful slice of normality on Monday night. I've been starved of normality ever since I was eighteen and it became a status not to be attained any longer.

 I dance with radical happiness on Monday, ecstatic to be moving and strong enough to move. I don't feel my illness once I have begun the class. I am in a room of women who are intoxicated by ballet's precision and elegance, who are sensitive and who laugh freely. I laugh too freely, to the bright-red and sometimes way-longer-than-anyone-else stage, to the dorky stage, to the 'faithful bladder, must we flirt with disgrace' stage. I am not Danielle-The-Ill there, I am Danielle. I dance with all of me, I laugh, I talk, I forget pain and loneliness and difference, and I feel as myself as I can feel. Without a moments hesitation, this is the most pure spark of joy in my life. It's an antidepressant bordering on euphoric drug - but I of all people should know that antidepressants are not side effect free. My last one caused my mind to conjure up such abusive sweat-drenched dreams that I had to farewell those little pills of yin and yang, stability and torment. 

My cells stop giving me life while they work on my broken ballet muscles, leaving me feeling sub-human, a human body in appearance but chained in painful slowmo land.

Oh I need to get a nappy for very-busy always-talking toddler? OK, sure. Let me wade against this heavy water, or is it oil, it must be denser than water? I'll try to shift with these weights dragging me low. Oh, now I need to empty my own bladder. I think that can wait a dozen minutes or hours. I can't fight the seas and these chains. I am just too drowned to do much more than survive. I read "heave ho, up we go," Aurelia's book about a bus that has gotten stuck in a hole. She dictates that I read this book two hundred times a week, and it is not lost on me that I share a lot in common with this pit prone bus. On Tuesdays it's hard to say "heave ho, up we go," let alone "heave ho" myself around.  A tractor gets it out of the hole. My tractor is Wednesday's arrival. 

The side effect of one hour of dancing and half an hour of talking with people I love...is, well, a kind of internal physical abuse that lasts twelve hours. Do the maths and it seems that perhaps the side effects aren't worth the pill. 

But here is the thing: I am so wretchedly tired of side effect mathematics. And even more tired of side effects themselves. And even more tired of avoiding side effects, which is code for: not living very fully. 

I have been reading a book on raising children and the author puts forward that parents and educators should equip children with a rich interest in many good things - in literature, art, food, movement, music, nature, truth. Things that will later help that person live fully, not miserably and messily and depressively. (Not that mental sickness can be whisked away with a dose of nature, if only, but it will always enhance a life.) Seeing the beauty in life, given to us as therapy, is essential when work and challenges rise high.

Humans weren't meant to live between four walls, their only contact with the outside world being a screen. Illness often forces one into a little four walled prison, with not much abundance of life. 

I choose to live fully on Monday night and suffer fully on Tuesday, and the maths of pleasure to pain doesn't work out, and I could avoid that pain if I didn't go, and I should not groan that I hurt horribly when I brought it on and even paid money to bring it on...

But, I am a human being and I need to dance or else I might morph into a grey-minded robot who stays at home to avoid micro tears and macro consequences, and whose heart forgets what liveliness is, embittered by caution and restraint and post exertional malaise. Embittered. Physically struggling, but not putting up a struggle against despair. 

In the end, I can risk torture Tuesdays, but not a listless life. 

how to hurt a tiny bit less

Bubbly relief, my head has been still for three days after forty difficult ones. Life with the ability to move my eyes is very sweet. I can eat a whole meal because I'm not swaying from fork movement, and nicest of all, I can bend down my head to kiss Aurelia with ease at any time. My flighty little creature was nigh impossible to cheerfully care for when each movement was torture to me.
The hundred eye movements that occur in a few seconds were leaving me giddily exhausted and really thoroughly miserable, but now I am grounded again. For now at least.

The last month of vertigo and the onset of cold weather has forced me to open my pain management tool kit.

When I became an adult, the variety who is ill most of the time, I didn't have any tools, bar going for a walk when I wanted to scream. I had not the foggiest idea of how to deal with discomfort or live with compassion towards my body. I felt compelled to push through, and not deviate away from an impeccable attendance record and relentless work ethic. Sometimes I couldn't sit through dinner without feeling anxious and struggling to breathe, because I needed to get back to practice. Relaxing was a foreign concept to me; how did one even go about this? And how would one quiet the barrage of accusatory thoughts of "this is time wasting indulgence" anyway?

When you endure pain for many years in a row, it corrodes your desire and ability to push through. Short term, much can be tolerated, but long term it wears you down. Sometimes even two days into suffering you don't feel so able to deal with it, and you start googling with ferocity to find an idea for relief. There is nothing gung ho left in me now days, and every fibre of my being craves soft gentle ways of living. Once I would have viewed taking a hot bath daily as indulgent, now it belongs in my toolbox of how to manage pain, lethargy, and associated sadness. 
These are my most used tools:

1. Sparkling Mineral Water
Drinking this is not like drinking water. The prickly bubbles feel so good on never ending sore throats. I feel slightly more effervescent after drinking it every single time, and wish I could afford to drink it constantly*. It's fun watching it bubble over when you open it, and not worrying that it will stain your clothes. Energy giving. Tonic.

*If soda stream produced the super prickly wake-you-up kind that I like, I would get one.

2. Kombucha
Enlivening like mineral water, but with great taste and a sense of drinking alcohol - good for people who find alcohol makes their muscles droop into the earth, and their heads spin (even more). Also good for people who are avoiding intoxicating their young.

3. Spiky ball
$2 Kmart purchase, worth far more. I use it regularly on my back and neck, and it saves me going to the physio 10x a week. Best used after heat, and followed with a heat cream.

4. Bath
Obviously this is not good if your blood pressure is low and baths make you pass out. But if you can hack them, oh that hot water relieves not only muscle pains but emotional too. Sometimes I use a guided meditation on my phone so that I will relax fully from toe to scalp and breathe deeply - especially when I feel I can't cope with all the sickness.

5. 90% Lindt
Low in sugar and highly satisfying. One square each evening with tea (tea is such an obvious tool that I won't give it a number, but it is my most used in winter). Work up to it if seems bitter.
 
6. Chewing gum
Unhealthy sweeteners, probably carcinogenic like everything else in life, but very helpful if you have zilch in the tank and really need to drive somewhere or walk. Gives a little energetic boost.

7. Flight mode on
Resting with a phone is more stimulating than it appears. It's lights, colours, mental chatter, and multitasking. It promises to distract you, and it truly does, but it distracts from peace too. Flight mode on, phone away, eyes closed takes self discipline but revives me better than scrolling.

8. Night sky
Sometimes before I go to bed I sneak out the back door and stare at the stars and the beautiful moon, and almost every time I get a wave of perspective. The celestial vastness exclaims to me that tomorrow could be better, that there is something to be thankful for, that the Creator of both the sky and myself can be trusted.

9. Text pals
Friends, in similarly leaky boats and less leaky ones, who are happy for most of the friendship to be conducted via messages of honesty and empathy. A friend who doesn't expect replies within 5 seconds and doesn't expect 'good vibes only!' Then be friends forever more.

If you have more magical methods for managing discomfort, please share them with me because each of these is a survival treasure, and I'm collecting.

energy free

I am an energy conservationist.

It's been my occupation since I was eighteen. I was pushed into it; it definitely wasn't the direction I wanted to go in because I am by nature a creative. I'm not going to lie, it's a high stress job with evening work, weekend work, and very few holidays. I'm responsible for rating the energy required for each day, each component of the day starting with showering (if there is enough for that), and ensuring that there is some surplus at the end. It's a very precious and rare resource, and sadly endangered. When we get into major debt, it can take a long time to procure more because it isn't manufactured by man.
Living without it is in those times is catastrophic for those involved to say the least, so my role is to scrupulously ensure that all is being done to conserve it, whilst also not putting an entire ban on the use of it because it is a resource that is required for human flourishing. It's an excruciating responsibility to get the balance right, and I err from time to time. 

Right now is a difficult time in this industry. I perceived that a wedding at the start of April was going to take all the stored resources from a bounteous summer and put us into major energy deficit. I tried to minimize the usage, but my worst fears were more than realised. The deficit was large, gaping to be honest. The worst in years.
As already stated, there is almost nothing that can be done to procure more so once you get to this point it's a waiting game, and patience when there is no given end point is the hardest kind of all. I thought there would be a recovery of energy, ready for distribution to the affected parties 14 days later for a flight to Queensland, but no. Even away in the warm Sunshine Coast, renowned for it's energy production, I was unable to lay my hands on any. The suffering from it's lack was dizzying.

Coming back to Victoria was hard because the mission to Queensland had been unsuccessful, in that way at least. Despair is creeping in now, because it's been a month without this resource, and that's a long time. We're also heading into Winter which requires a vast amount. It's hard not to look back and go, "What could I have done differently? Is this my fault? How on earth do I procure more?" That's the stress, when I've done my best to conserve, it's totally out of my control, and I simply cannot manufacture more.

Now my role is about encouraging those without energy to live simply and wait expectantly in good spirits until it arrives. They tend to believe there will never be any more when it gets to this point so I have to try and bolster their dormant sense of optimism. Remind them of the deficits of the past and how it did come, in the end. That they will be able to walk and dance and drive and knit again. These days are hard from dawn til dusk, there's not enough for the most basic human needs, but I've been in this job for eight years now and I know it will come.

When it does, I'll be back to rating each event of the day and year and trying to eke it out with wisdom. My role cycles on and on, like the moon and the tide.

I wish there was energy as plentiful as the deep waters of the sea.

So long as you're healthy that's all that matters

My thoughts are scattered as I recover from what I hope will be the biggest event of my year. Joyous and big. The term 'recover' is a euphemism, for acutely, deeply suffer. It sounds so cosy and hopeful, and not at all as shocking as the reality, so I use it though my mind mocks it simultaneously. There is no sense of recovery yet, just physical devastation.

Today I had to shower after two days of being too unwell, and with a husband to wash my hair I managed it. Immediately afterwards I felt proud, cheerful, and fresh with my clean hair and deodorant. I lay back in bed glowing (well, actually limp and palid) with achievement and hope, but the exertion caught up with me in a few minutes. I am pummeled from my effort. It's a few hours later and I have been zoning in and out of lucidity, I blacked out as I got up to turn the blaring Beethoven off, and I'm squinting with light sensitivity.

I am jelly. I am weak. I am fragile.

The 'strength' I woke with evaporated in the shower. I am humbled to be so needy. It's easy for the next step to be: I am worthless. Because I can't look after my girl or move or do any of those mundane but value giving duties. And if I am worthless {which I am not, because my Creator God made me meticulously and lovingly} then are those who are the most able bodied the most important and valuable? And those who are disabled or ill or unborn the least?

People always say, "So long as your baby is healthy, that's all that matters." Do unhealthy babies and humans matter less?
Everyone matters.

I leave a thought provoking article which deserves reading to the end. If you are interested in mind-body philosophy, anxiety, pregnancy, or suffering in general it is an interesting read.

SuperBabies Don't Cry

glow again

There will be evening air to drink

                                      laden hopeful air

You'll have a deep belly laugh

                                   blah will sculk away

Sure as day's dawn so a time will come

Where you float instead of sink

There will be a whole night asleep

                                     peep and wail unheard

You'll frolic along the beach

                         content as smallest sand  

Sure as stars burn so a time will come

Where you are not prone to weep

Seems the time will come too slow

But memory tattooed me this -

Swift as clouds melt to other forms

          shifts can come and flow

Over your wan weary bones and make you warmly glow. 

a week in the life of yours truly

The eight years of Chronic Fatigue Syndrome gong boomed in my ear earlier this month. I felt mostly numb, and talked about it with no one. I thought it would be a two year blip when I was eighteen, because that was the word on the street, but a decade looms. I think how hard existing has been, and I think how eternally grateful I am to have met my man and carried a baby, because this has eased the sadness 100 fold.

Charlotte Bronte says things how they are, which is why I adore her words. She writes in Shirley:

Men and women never struggle so hard as when they struggle alone, without witness, counsellor, or confidant; unencouraged, unadvised, and unpitied.
  
And while I have felt acutely that I am an invisible minority, I have also had so many encouragers, advisors, and pitiers who have made eight years far more bareable. I want to list their names here but I would probably omit one and regret it, so I list them silently in my head.
I've been sick in a comfortable home with a full fridge and kind friends. This is not the way some people are suffering, and my heart aches for them.

I remember earlier times of this disease being acutely intense, and other times where I had a little business and stayed awake all day. This is a snap shot for my own memory of now, eight years through. I say through because the notion that I will pass through to the other side of this still lives in my heart, especially when I see how far I've come. 

Monday 

It's chill, and grey, and I am utterly exhausted from feeding Aurelia twice in the night and having insomnia. When I had at last fallen asleep, she needed to be soothed with milk at 12am, and I had to fall asleep all over again. It was a gutting experience, to be repeated soon after. 

I feel ghastly, heavy, weak. And numb inside. I don't know how to smile. I don't think I can endure the day, hour by tortoise hour. Is it the grim sky or the sleepless night which makes me so sad? Duty is the only force in my body today, and it is a stodgy one. I feel so weak that turning the steering wheel into our driveway is challenging. I can scarcely believe it's powered steering. I wish for help, but it's scheduled for different days. The last part of the day is spent lying on the couch while Aurelia brings me books and I try to be entertaining whilst horizontal. She hides her cat puppet up my top, and I make it meow till she takes it out. I try to smile and laugh for her sake but it is so forced. 
Ben gets home and I tell him I am so low that I don't want to be alive. These conversations don't alarm him too much, because he knows I am rarely hopeless for long.  

"God surely did not create us, and cause us to live, with the sole end of wishing always to die. I believe, in my heart, we were intended to prize life and enjoy it, so long as we retain it. Existence never was originally meant to be that useless, blank, pale, slow-trailing thing it often becomes to many, and is becoming to me, among the rest." Shirley, Bronte. 

I didn't think I could go to ballet, but after he has taken her and I've had a hot drink I decide to beg my body for an adrenalin rush if it won't give me any at home. After a whole day of no strength I want a shot of it, to cheer me. I want to prize life and feel fully alive, so I go to ballet, initially weary and melancholic. Concentrating so fully on finesse and defying gravity breaks my mind's focus on monotony, and I come away with very sore feet and glutes, but uplifted spirits. 
Tonight I drift off easily. She feeds twice again, but I sleep in between. Its the first time since I began classes a month ago that I have slept normally afterwards. That means my mind has finally processed the experience: it has defibrillated ballet.
I'm elated when I wake and realise that my brain has made peace with an outing. 

Tuesday

No insomnia. Sun is shining. My mental optimism is powered almost entirely on sunshine and sleep, so I am like a different person. In the past month I've been couch or homebound on Tuesdays after the exertion of Monday night, as my body tries to replace the resources I extravagantly poured out. 
Today is different. I don't have a hangover. I'm not seriously energy deficient which makes me wonder how much of my hangover has been related to those shocking nights of my mind processing ballet though wakefulness and vivid dreams? How much of my hangover is due to muscles healing? My muscles don't feel too broken, so perhaps that's why I have more strength. Do more broken muscles mean worse sleep, because my body pours resources to my muscles instead of into sleep? I know full well that it takes energy to sleep well, a strange oxymoron. 
I always nap for 2 hours (or a measely 1.5 in this case) in the morning with Aurelia. I can't stay up all day, or I wilt and collapse. After this I go out with my adorable toddler to the park, and it's so much easier to wield the steering wheel today. Less muscle malaise, more smiling, and most notably: no thinking I can't get through till dinner time. That is the hallmark of a very very good day.

Wednesday

I think my throat liked that we got to sleep from 12am -6am without interruption. It felt nice and friendly in the morning when I swallowed, which is rare. I decided to scrub our poor scummy shower before our nap, which was a tiring exercise. I wanted to sleep immediately after that, but Aurelia needed significant and lengthy help to fall asleep. Aurelia was cared for in the afternoon so I could go to the gym. I really just wanted to go and lie in a park and drink Remedy Kombucha while she is not my responsibility - but, self discipline wins. My gym program is helping me feel strong, and go to ballet, and avoid neck issues and migraines. This program is the most effective thing I've done in five years of gym, because it is designed so that I won't have bad muscle malaise afterwards whilst still being very effective. {Keiser Training}. I fight my lazy side hard through this hour. It moans and groans to me incessantly and so I have to engage in mental warfare which it is all the harder because the exercise bikes look onto a pizza establishment and I see happy people who aren't sweating going in there. They really do look happier than weedy me and the protien guzzling hulks. Pizzas have protein too. When I get home its hot and I'm feeling like shakey jelly. I flop round on floors and couches while my girl is entertained and keep on flopping till dinner and beyond. Overall a good day despite an energy-free afternoon, because it passed without a 'can't make it through' crisis, I had a helper and companion, I did what I needed to.

Thursday

What a night. I was still awake at 12am tossing in the heat when she first woke, got some sleep before she woke again at 4.30. I dread opening my puffy eyes and swallowing. Today it would be better to just lie in oblivion, but I have a toddler who comes in giggling to show me her dog book. Ben doing the dishes for me before work makes me feel slightly less distressed about living today.
I'm really too tired to write much tonight: this is rare brevity for me, tis not my strong suit. We made it, just. My mother came to mother my young, and I brought veggies. I didn't feel too sad. Bed is nigh. Goodnight. Please may it be good.

Friday

Today's struggle is brought to me by Aurelia's howling at 12 and 3, and my trouble getting back to sleep. (I only know these times later when I ask Ben because I have a strict no-clock rule). My difficulty falling asleep and need for a lot of it are hallmark CFS symtoms, and the main reason we were terrified to have a baby. Truthfully it has been as hard and harder than we imagined, especially the year of vertigo. Yet here I am, 16 months of broken sleep later, and arugably more well than I was at the onset of my illness. I used to be just as sick on 11 hours sleep. There is no way I could have stood without fainting or lived without a deep headache under these conditions in past years. Certainly I am under the weather today, but there are degrees of it and I have been worse from almost no exertion. CFS does not remain the same in eight years, there are slow shifts backwards and forwards.

When Ben drops her in my room as he leaves for work I still haven't opened my puffy eyes or lips. He leaves his work number by my bed because we both know that I may not be up to caring for her properly. I need too many sick days and can scarcely have one.

I'm just hoping I'll be well enough for the things we have on this weekend. Not that hoping is an effective thing. I am more accurately consoling myself that a lot can change in 24 hours because I've witnessed it many times. Celebrating Ben's birthday is one of the weekend activities and I baked his cake 10 days early because I knew I may not be gifted with health on the right day/week - I've learnt after the last two years of being caught with no cake for this reason and feeling like a horrible wife.

My sister's piano student cancels, so she calls me and asks if she can help? This is the kind of unexpected thing I have grown to expect, a perfectly timed kindness, and I agree.
I'm ragged, but I'm still feebly kicking, and Aurelia's kicking and sometimes screaming. I'm pretty grateful that this week is over.
It could have been worse, if I'd had a glandular flare, headaches, or events to attend, but it was very sleep deprived. Ebb and flow, wax and wane, up and down - I know better sleep will come. Goodnight.

a lesson from my husband

I went to pick Ben up from the hospital and this time he emerged not as staff, but as patient. It had been his turn to lie unconscious on the table. I think this is a better state of affairs than lying fully conscious on the table with engulfing hospital phobia, but that is not the point, that is just my brain feeling a tad traumatised about my adventures in child bearing. His nurse spared no expense on bandaging his leg, and his limp matches the bandages in its pronounced manner, keeping one leg entirely straight at all times. He clonks along, slow and rigid, surprisingly adept at avoiding bending his maimed leg. He doesn't err; he finds creative ways to always keep it straight. Pain is the deterrent, and a powerful one.

Oddly though he now walks, I would never expect him to bend it so that he would look more normal. It would be cruelty to suggest he pains himself to improve his performance or suit my pace.

Yet how many times have I bent my metaphorical sore knee, to keep pace with the unmaimed? I see it as instinctual and right for Ben to limp to avoid pain, yet I feel pangs of guilt for avoiding pain, as though I am selfish for staying ok, for not living on panadeine forte like I used to in my student days. Guilty, for carefully adapting my gait so that I won't damage myself, so that I can enjoy being alive. When I am pain free due to careful limping, I sometimes wonder if I should have done more...is it cushy, that I had a quiet day and have no headache? Or ought I have stepped out, bent the injured knee, suffered more and contributed more? But how I detest pain which I could have avoided.

Is it a basic human right to reduce pain where possible?

For Ben's limp, I answer of course. It would be masochistic not to limp.

For my body, I pause.

I wobble on my tightrope. It's impossible to limp so well that I can avoid discomfort. I try, because I need to be well for Aurelia. I need to be very functional. It would be foolish to lie in daily comas because I worked too hard or socialised or stayed up late. Conversely, it would be idiotic to stay at home, live in squalor, and never see a human to avoid stimulation.

I cannot avoid pain entirely and will always be evaluating the wisdom of each outlay of strength. I am utterly weary of the analysis, the endless fumbling for wise decisions. The consequence free decisions of the well are a peace they are not aware of, whilst the decisionathon of my own life is a breeding ground for anxiety and analytic mania.

But if I can let my body heal a little, and feel joy not despair at being alive, and not groan ceaselessly to my nearest and dearest, requiring all of their care, because of the pace I have adopted, that seems right to me.
Right to minimise pain, to limp, to not keep pace, to respect my wound.

How compassionate we are towards a tight bandage, a white flag of legitimacy.

But I have no bandage.

i was seen // hangover diaries

When I was little and sick, my mum would fetch me a snuggly quilt, make perfectly crisped toast, sit by my bed and pat my back so soothingly that one day I would try to emulate that exact motion for my own young. Having your mother sitting there is the gold standard of being unwell, and it's harder to find once you grow up. You're so seen and loved in your pain when you're small. Symptomatically alone, but that's where the alone stops dead. There's no emerging from your illness and being asked "where were you? Oh you were in your room with a fever for three days, I didn't know." Nope, she's seen every limping trip to the toilet, and passed you water the whole time.

But now I'm grown, and no one is patting my back.

My cushion is damp. I have watered a lot of cushions and pillows these eight years, preserved them in salt. I don't soak them with gushing waterfalls anymore, because shock and grief have mutated into sober familiarity, a mellower, gentler beast. I sometimes think it's unnecessary that it still trickles out...like there is a pool behind my eyes called 'chronic pain' which ought to be empty by now. I cry the exact same tears, the cause is unaltered, and the emotions have long been acknowledged and disected. My pool seems to have a refill mechanism when I'm lying quietly, and my body is raging ungratefully that I participated in life outside the home. How dare I. I was once asked, "but can't you use less energy when you're out? Tone it down?" No. I can't. It tumbles out, my small supply, and I watch by in trepidation, powerless to gain more power, or prevent loss of power. Powerless to prevent my own suffering.

The droplets are salty, but the salt isn't bitter.

The droplets are more, this is disgustingly uncomfortable, as usual, as expected. It's just as I knew it would be. It's identical.

No one can see into the misfunctioning cells, muscles, sense of balance during the time or afterwards. It's in the dark recesses of me. I can tell them, but it's so dreary and morose I can barely be bothered, so I will just feel it myself. If I'm not seen by anyone in this time, if no one can imagine my pain or view it, let alone cure it, how alone I am. How nobody I am in this moment. I must lie and wait, wait till it eases, invisible, feeling helpless and dispensable...but for my all knowing, all seeing, sky painting, language making, human weaving, gift giving God. So I am seen, I am not forgotten. I am as legitimate and valid as a mother's sick child.

This thought is warm and luminous.

On my porch this hungover December, hungover from festivity-x-suffering, sat a large woven basket with my name written on it. I unwrapped a large sheet of fabric encasing the contents to find no ordinary pre-packaged hamper. It was filled with home-made cake I could eat, home baked cookies, and crackers, and hummus, and bars. Sparkling water, tea, soap, berries, every conceivable festive, delicious and healthy thing in sweet pottles. It contained every special treat on the menu to those with sensitivies, many un-buyable. It was a bottomless pit of seriously thoughtful time consuming gifts, brimming with every thing I hadn't shopped for and hadn't baked and wasn't going to.

The note was from the mamas in the group I don't go to. One of the harder things all year was seeing and knowing that women with babies were meeting in groups and I couldn't manage to because - well, I had to nap twice a day and it fell during group times, and if I used energy seeing people I couldn't make it through to dinner time. The usual complicated trickle down of Chronic Fatigue Syndrome.

The note said that they dearly loved me. They barely know me, they haven't seen me enough. I have been missing from their times together, they met dozens of times times, and I tagged along twice. They're talking about the verb - to love.

To extravagently love someone who has done nothing for you.

It would be easier to make a huge handmade hamper for a person they had grown fond of all year, but no.

That hamper said: You are so seen. You are no outcast.

It was the most overwhelmingly golden standard, in adulthood - love, because they also know the "you did nothing for this, but I love you" kind of warm luminous love.

to all the complicated ones

To all the people who like things to be perfect, who notice crumbs and stray hairs (and attached hairs with juicy roots) and endlessly remove them, then wearily re-remove them when they re-appear and try not to despair, but do.

All the people who notice feelings, their own which are bursting, or morbid, then moderate for a second, too short, then back to extremes. 

And all the decisions which were chewed to peices because there is always some losing in the winning and why must there be...this imperfect business is hard to accept...

And all the words which scurry around in heads from all the conversations, their own imperfect words, and the other person's words, the clashes and the synchrony, and the general mayhem of chasing them off to bed when they will not go, when they are still perky at 1 am in the morning and show no signs of settling down at three. 

And all the vibes between the words which are far peskier than the words themselves.

All the people who have strange rituals and want to kick and scream like two year olds because it all boiled up and spilled over and left them worrying they weren't quite right in the head, when they don't need an asylum at all. 

All the ones who have a reliable intuition, and know when they know.

All the plans for a perfect date which end in graves of dissapointment.

The ones who can't pick up the phone when it rings, and can't believe that it was engaged when they had finally psyched themselves up to call, the ones who get nervous on their way to friendly gatherings, nearly faint as they walk through door ways, and endure pounding hearts when the door bell rings. 

All the monotone skies which shouldn't affect the will to live, but do, and all the while sensing that many people aren't feeling all these things quite so acutely and aren't finding existing quite so hard. 

Then all the flooding self recrimination for being sensitive to skies and hormones and persons and medications and changes and things.

All the people like this are aware and raw and gentle and fascinating and worn out - its horribly uncomfortable, but goodness gracious me, you are my favourite of all and your presence is a balm and my feelings for you are not moderate at all and my intuition says we were meant to be on earth at the same time to comfort each other.

post captivity complications

I don't want to say that I'm an efflorescent butterfly because then people seem to say things like 'I'm so glad you're better forever', and 'Now do every thing because you're a butterfly'. And then they get shocks like,
'But you said you were a butterfly, yet you seem to be in a cocoon, I'm so confused, did you mean moth?'

Life is in, out, up, down, waxing, waning. Serious waning for all us crescent moons. But we wax too, and I am increasingly convinced that we must not only converse about our woes if we want to accurately share our lives. There is a time to bawl and a time to squeal.

Some days, I'm a butterfly. After being a guttingly grovvely caterpillar for two years, it's surreal. I'm a butterfly, in the way that a clip-winged butterfly can be, if I'm calm and gentle, ever so calm, ever so unstimulated.

I don't quite know how to feel about not waiting by the window in a crumpled mess for Ben. For getting his message "The case has gone over I'm sorry, I'll be a little bit late," and thinking, well that's ok, I'm still able to stand, I'll chop the beans. I don't chop food, so it's a bit weird. I did the dishes, cared for my child, strolled for an hour, and chopped beans? Then I sat up (versus slumped on the couch) to eat dinner, in our sun drenched dining room.

It's a bit too glorious to feel that okay.

The trouble with butterfly days is this: I know it won't last and minute shards of sadness zoom around because I want to feel like this forever, because the relief is too excruciatingly nice, and the contrast seems all the more glaringly piercing.

I'm a living oxymoron when I'm euphorically pain-free, because my heart physically aches.

Is it actually good for a bird from captivity to fly in the expansive sky and then be returned to its cage? I lean towards, yes, its better than captivity it's whole life. But oh, going back in the cage.

I didn't know if other human beings also feel what I'm inadequately describing, for it doesn't come up in conversation.

But I found the answer to my question in a book I recently read:

Perfection is beyond the reach of humankind, beyond the reach of magic. In every shining moment of happiness is that drop of poison: the knowledge that pain will come again.

Dumbledore, J.K.Rowling


I had an epiphany reading that: I am seeking perfection once again, this time in emotions. Perfection is truly unattainable and mixed emotions are not my solo struggle but a universal reality. I always feel that the earth embodies these realities, and weeds springing up by daphne and jonquils and jasmine is proof.

The weeks that followed this passage were ones where I mulled and ruminated, granting myself permission to feel relief with a sprinkle of grief for the past and future. I felt a lot more peaceful once self recriminations for heart shards were removed. I thought, perhaps every joy is tainted because of the fallen world? It struck me as a fairly miserable thought, that every happy moment had to be part sad. I needed more reliefs and elations to test the theory on.

Out of the hopeless blue, one arrived. Our impling slept for nine hours in a row. No letters to warn me of her plans, no gradated steps. In this matter of sleep, I had finally annihilated my expectations, because it was the only way to be content. I had decided that the poison of expectation was not doing me any good, and I'd slowly picked it all out.

We had goofy shocked faces that morning. 'How could this happen to us?'

She might do it again in another six months I thought with ineffable happiness, high expectation me having done a solid 180.

Two nights later she did it again.

Deep sleep deprivation and ensuing pain will come again, but my joy was weedless, and curiously I don't have a sore spot under my left rib thinking about it. {When I say weedless joy, I refer to the following day. The actual night I lay on my bed worrying she had suffocated and died, and I strained to hear a cry, please, I just needed to hear a cry.}

Maybe heart shards during relief are a peculiar experience reserved for the heavy grief of eight years of mostly unrelenting illness?

Perhaps many joys will be less tainted by sadness, with a quarter drop of poison versus a dollop, with just a lightly held mental recognition of the transient nature of elation.

I cannot curse transient elation, for the same principal promises transient pain.

Nothing lasts forever.

Except eternity, and I have a feeling I will never tire of an earth free from poison.

chronic milk making

While I was pregnant, women who had raised babies themselves, and knew how under powered I was at the best of times, they must have felt a serious twinge of fear on my behalf. I remember clearly conversations which went like this,

“And don’t feel bad if you can’t breastfeed, because your health is more important. It’s ok to give formula. And colostrum {milk with extra super powers in the first couple of days} is amazing all by itself, even if you do a couple of days that will be great. ”

And I would say, with my lips, “Yeah, I will let that go if I’m really not well. I won’t beat myself up.”

But my heart was not in sync with my lips. Not remotely. I didn’t want to sound like the naïve new mum I was, spurting forth her untried opinions, so I kept my opinion to myself. But my opinion was that I would rather give her the best immune start to life and suffer myself for a year. Breastfeeding cannot prevent a baby from getting a chronic illness, but it’s the first gift of health I could bestow on her, and there has never been a gift I’ve wanted to give more because I’ve never loved a girl more.

I knew that even my well mum had been run down and needed daily sleeps whilst sustaining another life with her milk, so while determined, I was not expecting an easy ride.

A couple of weeks before she was born I started to express colostrum drop by drop, on the advice of my private midwife, because I might be away from her for the first hours, and because it’s a powerfully healthy thing for a newborn. I arrived at the hospital on the day of her birth with ten filled syringes to be put in the fridge, to the surprise of the staff who don’t usually see or encourage women to do this prenatally. I thought my hours of work and patience extracting each milliliter might last a while – so I was partly horrified and partly chuffed when I heard the doctor had given her all ten syringes at once, as soon as she arrived in Special Care. I had been her first medicine, even though I was still lying on the operating table, and that was worth it.

I was extremely blessed to have good supply, but I soon had to call upon my iron determination to feed because after a few weeks of decent times, things got bad and stayed bad for about four months.

In medical speak, I had recurrent white spot (sounds cute, feels like hell), recurrent infections (this should not have surprised me, infections are my specialty), vasospasm on one side, mastitis, and regular blocked ducts.

Four months feels more like four years when you’re breastfeeding, because young babies feed around the clock. So frequently that the scabs would just dry out a bit from the last feed, enough to make the next milk extraction excruciating, but not even close to healing. Then I would feed, the scab would be re-opened, and the cycle repeated. It was like being cut open with a knife regularly without anesthetic, day and night.  I had to majorly psyche myself up before her feeds, really prepare myself. I tried everything to ease the pain; every preparatory step before bringing her to drink - but from the moment of latch, I would frantically pound the floor with my foot and moan. I would try to breathe, but it was more effective to beat and groan, to try and stifle the murderous sensation with other sensations.

Ben wanted to be with me in the pain, he wanted to comfort me. But I was in a fiery hell of sensation, and would have been borderline violent if he tried to put a comforting arm around me. Maybe not even borderline.

I would say through gritted teeth after preparing myself to feed her,

"Ok. I'm about to do it. I'm getting ready. Can you just sit in that chair over there. And pray. And don't talk to me!"

And he would sit there silently, and watch me cry and groan. I needed him there rather than pottering around painlessly in the kitchen. I needed to know that he was sharing in my pain as I fed our girl, even though he couldn't take an ounce of it away. 

Sometimes I would express milk instead because I needed to let more healing occur and I emotionally could not handle another strong suck. But as she grew older I couldn't express enough for her whole feed and had to supplement it with my freezer supply, and it wasn't an effective emptying method so I would soon get blocked ducts and be forced back to letting her latch. 

One day a nurse taking my swab told me that she doubted I would be able to heal while continuing to breastfeed. This woman who was not a feeding expert and ought not to have shared her personal opinion, she preyed upon my greatest fear. 

I went home and talked to my Mum. My own mum had been damaged, and kept feeding, and healed. Then I talked to my friend, who had healed while still breastfeeding. Next my Lactation Consultant, who said that every person she knew who really really persevered had gotten through. And Ben, he was going to sit quietly in that armchair, and not make a sound.

I could not see for the life of me how healing could occur while each feed undid the scabbing. It seemed impossible to me. So I left that hope and belief to people who had been there themselves, and set to work on the only path possible for discomfort. 

Right now, present moment.

I focussed on getting through one feed, however bad. 

Then celebrating. Walking around the house feeling the light delicious emotion of relief. 

One hour later, relief giving way to dread. 'Can't go through that again,' circling in my head. 

Baby crying, obligation reigning, going to that awful place again. 

And that was how it passed. It wasn't a calm, breathing, full of hope affair. There was no bonding with her, no staring into her blue eyes with a smile. I was channeling psycho, moaning, arm flapping, mega-tense mother to her while she drank. I was gritting my teeth and only half believing that deeply ingrained phrase that the only way out was through.

Through I went, as Ben quietly watched and acknowledged and other people voiced the hope I couldn't feel. I couldn't write about it because I was submerged.

Concurrently, vertigo had entered my life at two weeks post partum. Vertigo took from me one of the senses I had most taken for granted, and assaulted my will to live. I didn’t even know that looking out the window and seeing a stable picture was one of my favourite things till it was gone. I didn’t realise that lying in bed with your eyes closed and feeling completely still, that is of the life’s greatest luxuries. Life was simply undesirable when there was no peace; a constant moving haziness which made me feel ungrounded and woebegone. 

At the time we didn’t know if vertigo was due to breastfeeding, or being up in the night. I assumed it was both, a muddy combination of two things that my body detested.

Occassionally I wondered if I weaned, would my nemesis vertigo leave? And would that be a wise decision, to be a more well person, wife and mother? If someone could have promised me that weaning would take the vertigo away, I may have weaned. But because I didn’t know, I did not want to wean and receive the rude shock that I still had vertigo, and my milk (and baby whispering powers) had dried up.

After four or five months, feeding became pain free. It happened gradually. At first there would be a day with no infection, no white spot, no blocked ducts, and then after the next bout of trouble I’d get a longer pain-free stint. It happened just as I had stoically and tragically realised that I might have to feed in agony for a whole year. I had lost hope that my pains could ever be ephemeral. I knew few women who had experienced problems for so many months, so I assumed I was stuck in this forever. I thought darkly that it was classic me to have a plethora of issues and chronic pain. I also avoided talking widely about my issues because I didn’t enjoy being told that it was ok to give up – I wanted to be encouraged to persevere.

Now the vertigo is like the tide going out at the beach. A lot of the time it is receding, but sometimes a wave lands high on the shore and I wonder whether the tide is actually going out after all.

It is always precipitated by extra use of energy, or sickness, or the baby waking frequently at night.

I still breastfeed regularly during the day, and once or twice at night – similar to the early days, and so I can finally say for sure that breastfeeding was not the single reason for the vertigo. It can’t have been soley night waking either, because I have not slept through the night for twelve months straight, yet the vertigo continues to ebb away.

I imagine it was many ingredients all smooshed into one eruptive mound: being up for long periods at night, producing so much extra milk initially, recovering from major surgery, the immense energy given to adjusting to a completely new life of work, and my body restoring itself after carrying a baby. 

The fight to feed has been rewarded many times over, with this ability which makes mothering easier for me as an unwell person. I continue to be in remission from POTS, a result of pregnancy and breastfeeding; I take hot baths without fainting and stand without blacking out.

I groggily feed her whilst still lying down myself for two minutes in the night, and she falls back asleep. I leave the house with nothing in my bag for her. I calm her tears and she pops off with a happy smile on her face. I read how good this milk is for her, I read that I receive an oxytocin hit every time I feed her. I hear people talk about how it’s odd to feed a baby who can walk or talk, and again I quietly hold my opinion inside. I fought to give her milk and I’m not about to fight to end her enjoyment of it. If she can verbalise how much she loves it, all the better. For now I am perfectly content with the spontaneous claps she gave me last week as she drank.